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Staying on Treatment

Treatment for bleeding disorders and for many of the conditions that commonly accompany bleeding disorders has undergone dramatic improvements over the past several decades. Because of these advances, people with bleeding disorders are now able to live long, healthy, active, and fulfilling lives. In fact, the lifespan of men with hemophilia is now approaching that of men without bleeding disorders.

To successfully manage your bleeding disorder, it’s critical to recognize your responsibility to be your own health advocate. Your Hemophilia Treatment Center (HTC) team and healthcare providers will discuss their expert opinions regarding treatment with you. However, you are responsible for the final decisions about your health needs and following a treatment plan.

Regardless of the type of treatment you’re receiving for your bleeding disorder, sticking to the treatment plan is a big part of its success. In many chronic conditions, lack of adherence can be a major cause of inadequate or failed treatment. The information in this section can help clarify some of the issues connected with poor adherence, as well as some of the things you can do to help improve it.

Causes of Poor Adherence

Most people with bleeding disorders lead busy, active lives—which can make following a treatment plan difficult. If you have a mild bleeding disorder you may find treatment even more of a challenge. In fact, individuals with mild hemophilia, for example, have been found to be significantly less likely to treat a bleeding episode.

Lack of adherence is a common pattern seen in people with chronic medical conditions that don’t always have a visible impact on daily health (such as high blood pressure, high cholesterol, or depression).

The most common reasons for poor adherence to factor use in individuals with hemophilia are:

  • A reduction, change, or disappearance of symptoms
  • Forgetting treatment
  • Lack of time for treatment
  • Inconvenience of treatment

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Improving Adherence

Regardless of the severity or type of bleeding disorder you have, you should remember that decisions you make today can have a big impact on how your bleeding disorder affects you in the future. This is true regardless of your age or current health status. Preventing bleeds and treating bleeds quickly and adequately if they do occur is critical to protecting your health, especially your joints, over the long term.

If you find that it’s difficult to adhere to your treatment for any reason, talk with your healthcare provider or Hemophilia Treatment Center (HTC) team as soon as possible. Together, you should be able to work out a way to make treatment easier for you.

Some topics you may wish to discuss:

  • Changing the frequency of treatment
  • Changing the time of day that you receive treatment
  • Keeping a treatment log
  • Identifying ways to remind yourself when it’s time for treatment
  • Keeping enough factor or other treatment on hand

When you adhere to treatment, you’re making an important choice. You’re choosing to take charge of your bleeding disorder so that you can protect your health over the long term.